I've just been reading some comments on other forums regarding this treatment for problematic veins and it's impact on RLS and I'm wondering if there might be value in investigating it further and I was just wondering if any members of this forum with RLS have had the procedure (or any other) and what the outcome was? The following article is from the journal Phlebology:
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Hi, it may be worthwhile you investigating this further if you suffer from venous insufficiency. It's possible your RLS is due to this, if you do have it.
Some people do find that using compression stockings does help with their RLS -as well as their venous insufficiency.
However, if your RLS is idiopathic, and venous insufficiency is NOT the cause of your RLS, then you can't expect either the stockings or the (more expensive) ablation to work.
The article you give a link to, does recognise this distinction between idiopathic and secondary RLS.
Thank you. I do have some of the symptoms - some spider veins, ankle/lower leg swelling and itchy shins sometimes. And I use compression stockings when I have a RLS breakout or forget to take my meds and they work well for me.
I really like the type of paper referred to here. There are numerous around of this type but unfortunately difficult to find. I have read many, but as is often the case, difficult to find again.
These numerous ‘micro papers’ tend to suggest that there is no such thing as idiopathic RLS; that there is a spontaneous acquisition of the condition for no external reason. Much of the dominant research implies through the general ‘we just don’t know the cause’ and a focus on my much hated obsession with dopamine, glutamate and low brain iron (BID), is that RLS is genetic and almost inevitable for the majority who have it.
Off the top of my head I can list neurological injury, mast cell activation disorder, oxalates (anecdotally), certain drugs, knee surgery, nerve entrapment, venous insufficiency, kidney dialysis and during pregnancy as identified causes of RLS, if not events to commence the conditions necessary. Also, as demonstrated in the paper above, that there can be very successful treatments specific to each cause. A recent post had SIBO as a cause and antibiotics relieving symptoms as another example; I'm still lost on how with that one.
I have ranted on before that my view is that RLS symptoms are a potential that most if not all people possess as part of normal brain function during motor sensory irregularities. The mystery is then in what happens physiologically to create the environment, other than the current dead end obsession of a neurological focus as the cause.
In no way am I suggesting the current research contrary to this view as being irrelevant, or this being a personally directed insult to RLS sufferers who have tried everything without success. Only that these papers are never referred to in mainstream and currently dominant papers on RLS, which is just bad science, and that a wider view on the condition could be beneficial for solving the unknowns.
Small intestinal bacterial overgrowth (SIBO) is a serious condition affecting the small intestine. It occurs when bacteria that normally grow in other parts of the gut start growing in the small intestine. That causes pain and diarrhea.
Spontaneous acquisition is exactly how I "acquired" severe RLS. With "growing pains" as a child and treatment for iron deficiency anemia at the time (probably age 8) - nothing for almost 60 years - then wham RLS. I can only surmise RLS was hiding in plain sight all that time! The trigger for me was a ski fall and head injury, 6-8 months prior, somehow promoting iron deficiency and the RLS.
i have had rls for 60 years. two years ago i had venous ablation in both legs. because of that i now have painful burning of my lower legs, and inability to walk more than a few hundred yards and the same rls i've had all my life. the pain in my legs is so bad it wakes me up at night, so now i have 4 conditions that prevent my sleep -- rls, sleep apnea, dyskinesia, neuropathy. i am allergic to all drugs prescribed for rls except dopamine agonists but they have given me such bad side effects and don't work that effectively. i average 3-5 very unrestful sleep a night. life isn't worth living.
I'm also sad to hear about your situation. I appreciate that may feel trapped and that your only option is to end your life. In which case it's really sad that you seem to have no hope.
You do say that you're allergic to all drugs prescribed for RLS, but you don't say what they are, so I don't know if that includes opiates. Opiates are accepted as being used for RLS when "first line" medications have failed.
I wonder also if you've been referred to a chronic pain specialist who might offer some hope.
thank you manerva. yes, i am also allergic to all opiates as well. for some reason they aggrravate my rls. and yes, i see (or rather phone conference) a pain doctor who has no help for rls and some marginal help for my painful neuropathy through the use of lidocaine.
It seems unusual that you should be allergic to so many different medicines. I wonder if you're allergic to anything else as it might not be the drugs themselves you're allergic to but the excipients.
I know it's a long shot, but tablets or capsules only have a small amount of the drug in them. The rest of the content is what are called excipients. The main excipient in the majority of tablets/ capsules is lactose. It may be the lactose that youre allergic to. Lactose intolerance is fairly common.
Please don't be offended, but part of the management of chronic pain is psychological. This isn't to say that the cause of the pain isn't physical or that you're imagiming it, but there are psychological strategies that can help. Such strategies could also help with RLS.
Mindfulness is one of them.
The only other suggestion I have that might help is cannabis.
Sorry, if you've thought of/ tried these things before.
I'm not a good counsellor and it's fairly impossible to counsel anybody through this medium anyway.
I would ask, is there nothing positive in your life? Do you have family? Is there anything you want to achieve?
It may be that you find a goal setting strategy helpful. This is something that's taught in "patient expert" courses. I came across it in a course for people surviving or living with cancer. It's a matter of setting yourself some small achievable goals and focus on achieving them.
Ultimately, I can't really help you, I can only offer sympathy and hope you find something which helps you feel your life has value.
you are so sweet to respond in such a kind and helpful way. at the moment, i am dealing with rls in my arms and going crazy trying to get some sleep. for the rls in the legs with which i am familiar, you can walk and walk and walk and get some relief. but the arms are, i think, more deadly because there is nothing to do.
yes, i've tried cannabis, cbd oil both external and internal and it causes hallucinations. i don't disagree about the psychological components and on occasion (when i remember) i try to use mindfulness. it is such a good way to help with recall and memory.
i wasn't aware of being lactose intolerant but perhaps i am. i do believe what you eat has an enormous impact on how you fell and rls in particular. i am now eating only gluten free breads and think the answer may lie in anti-inflammatory foods. the problem i have is living in a senior community and the foods they provide are all sugar and starch.
i am 82 years old and am have been in lockdown for over 3 months. i have many things i would like to do while i am confined but whenever i start any project my rls prevents me from making any headway. i live in california and i have a daughter 50 miles away but she is prevented from seeing me because of covid-19 restrictions. my son lives in virginia.
It is a difficult situation you're in because of the lockdown and being unable to see your son and daughter. I'm sure this must be contributing to your state of mind.
Do you manage to speak to them and see them online? I've found skype a great boon in the past. In fact I met my current wife on skype. She used to live 2000 miles away. We used to spend some time every day together online. Eventually, I went to Moscow to meet her in person. It is our 4th wedding anniversary tomorrow!
I'm so sorry that yiur RLS prevents you from carrying out your projects. I tend to live from one project to another There is no real future for me, I try to live in the present and make the best of my time.
I can appreciate what it is like if the present holds no joy.
I would urge you to exolie the poossibility of being lactose intolerant. Tgere is perhspa a test you can have.
Very interesting.Are they talking about poor circulation into the feet?,which I have, or what area of venous insufficiency.?Slowing down of circulation after eating definitely has caused my PHYSICAL RLS to activate. Can you give more information? You may be onto something not Known.
I believe YodaDog is writing about problems with veins in the legs. These veins, either superficial (just under the skin) or deep veins carry blood back from the feet and legs and into the right atrium of the heart. They only partly do this because of the pressure of the blood in them, but mainly it's because of being compressed by muscles in the leg and the fact that there's one way valves in them. When the walls of the veins stretch and the valves fail then you get varicose veins and blood "pools" in them and has difficulty getting back to the heart.
This is NOT the same as poor circulation TO the legs and feet because this woud be due to either blocked arteries or capillaries or heart failure.
Venous insufficiency IS associatef with RLS and is a cause of "secondary" RLS i.e. RLS that otherwise may not have happened.
Poor circulation TO the feet, e.g. because of diabetes can cause peripheral neuropathy and RLS. Again, this could be secondary RLS.
In either case the secondary RLS may be relieved by dealing with the issue causing it.
Unfortunately, poor circulation TO the legs and feet may be irreversible i.e. untreatable.
Compression stockings can help in the case of veinous insufficiency as they press on the veins helping to push blood back to the heart.
Laser ablation of varicose veins, which is what YodaDog wrote about is a cosmetic procedure aimed at improving the appearance of superficial veins. However, it destroys the veins, so it doesn't actually improve the problem of blood not gettng back to the heart.
If someone has RLS for whatever other reason than poor circulation to or from the legs then whatever's done to improve circulation e.g. compression stockings, will have little effect on the RLS.
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